Thoughtful Thursday: Would You

August 14, 2010

Thoughtful “Thursday” is late. Sorry.

Via Calliope, there is now a definitive test for Alzheimer’s. It works for those already experiencing cognitive impairment, and it may even work for those who don’t yet have any symptoms. People such as Calliope and Rita Arens from Surrender, Dorothy who’ve dealt with Alzheimer’s in their loved ones have declared strongly that they’d want the test done for themselves.

This week’s question, not just for this Alzheimer’s test but for any test which predicts a negative health outcome:

Would you want to know? For what? When? Why?

For some including Alzheimer’s, having a diagnosis could lead to a different course of treatment, which would be helpful. It would also enable people to make plans for their care, for how their loved ones will interact with them, for financial aspects, for lots of things that they might not be able to deal with properly later on.

Huntington’s Disease is quite a different situation. This horrible disease destroys the mind and body and typically begins in the 30s or 40s. There has been a genetic test available for Huntington’s Disease since the mid-1990s (applicable even to those who have no symptoms whatsoever and may be decades away from developing the disorder), yet 95% of people who are at risk for developing the disease choose not to have the test. There is no treatment, so knowing in advance allows for planning but not alteration of the course of the disease. Most people apparently don’t want to know that their lives might be over very prematurely. A few do.

Then, of course, there’s infertility. We’ve talked quite a bit about having advance notice, which some of us did and some did not (and others perhaps had some signs but didn’t take heed). What if there was a test that would clearly tell you about your fertility future?

I guess I’d want to know about Alzheimer’s. Knowing decades in advance does seem rather frightening, like a huge black cloud looming over your whole life, so perhaps I’d prefer to wait to know in late middle age or early old age.

I have no idea about Huntington’s — I am sure I would live my life quite differently if I knew, so I might want to know. I sure as hell wouldn’t waste time doing things I don’t want to do if I knew that my life expectancy was only a few years. Maybe that means I shouldn’t be doing those things regardless.

As for infertility, of course I’d want to know. One important issue with fertility is that time can be crucial. Knowing that you need to move immediately to certain interventions, or knowing that no interventions will ever produce success, would be incredibly helpful in avoiding wasted time, money, and heartache. One of the worst things about the whole process for me was never knowing if anything would ever work, or if it would all turn out to be pointless.

Definitive infertility diagnoses do have some possible downsides, too. Someone who knows before meeting their partner that they cannot have biological children may approach courtship and marriage quite differently. My best guess is that they will try to spare a partner from sharing their fate, even if the partner might have welcomed the fate if it meant a life together. If I’d known when I was 18 that I’d deal with infertility, I can’t imagine what I would have done with that information.

Knowing the future, assuming it’s the true future, also feels rather unnatural. If someone — whether doctor or fortune-teller — had told me at the outset, “You’ll end up with twins, but it will take 7 years, 11 treatment cycles including 2 IVFs, and $70,000,” I would have done it anyway. I would have done it, but I’m sure that I would have distributed the cycles and costs differently throughout those 7 years. Would those changes have altered the eventual outcome? Second-guessing a prophecy didn’t work out well for Oedipus and it might not be good for the rest of us either.

Most of us already have some kind of window into our medical futures via our genetic relatives. We have a sense of which problems are more likely to be in our future and which ones seem to be less of a concern. The uncertainty is simultaneously frightening and inspiring. If suspecting (but not knowing) that you might have cardiac issues causes you to eat better and exercise more, is that so bad? If you knew for sure that you’d have a heart attack at 43, would you bother living differently? If you knew for sure that your heart would be perfect for as long as you lived, would you bother living differently?

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16 Responses to “Thoughtful Thursday: Would You”

Actually I am not sure…we possibly have probabilities for everything in life.

I have a good chance of becoming a TB patient, since my country is a TB-heavy.

Chances of AIDS? Only through contaminated blood transfusion.

Chances of Infertility? Who me? I now know, but would not have been able to foresee it.

One thing maybe would be my chances of suffering from paralysis. 3 out of my 4 grandparents had that in their last days, and I can’t imagine myself being so helpless. When would I like to go for a test (if that comes about)? When I am 45+!

It’s an interesting question, something that crosses my mind every now and then. Regarding infertility, it would have been great to know just before TTC, it would have saved us a lot of time. But I wouldn’t have wanted to know too soon, for the reasons you mention above.

Regarding other illnesses – I think it’s a bit of the same for me. If you know about it too early in life, maybe you stop ‘living’, you choose to remain single because you don’t want a partner to suffer. You choose not to have children because you don’t want them to grow up as orphans… Or maybe you do manage to live life to the fullest, because you know it will end (too) soon. But how will you know how you will react before you get the bad news?

If it is something that nothing can be done about, then I’d probably wouldn’t want to know, or not before I’m 40+, but if it is something that I can take preventive measures for, then yes, I’d like to know ASAP.

Somewhat related… my mom was recently diagnosed with endometrial cancer. She’s now awaiting surgery and probably radiation therapy after that. It seems all very treatable and her chances look pretty good. However, her mother and both her sisters had their uterus removed around the time of menopause, because of irregular/heavy bleeding etc. My mom had polyps removed about 10 years ago as well. But now I wonder if it would have been a good idea if she would have had her uterus removed as well back then, because even though her chances to completely recover from the cancer are quite good, it does add stress and anxiety. And then when I consult Dr. Google about it it says that one of the possible triggers is infertility – so that probably means I’ll be at risk for this too later on (or all the women on my mom’s side of the family have some problem with their reproductive parts and there all different… my mom’s cancer and mine is infertility?).

This is really a hard one for me. I’d like to think I would take the opportunity to know and live my life accordingly but, I just don’t know. There are so many pros and cons to both knowing and not knowing. I would have to seriously think about it before I could say which path I would take.

Lostintranslation’s comment reminds me… A friend of mine had his first cancer diagnosis when his first child was 3. His second cancer diagnosis, a totally different kind of cancer but one which may have been caused by radiation for the first cancer, occurred a couple years later. Soon after, they had their second child. I asked him if the cancer made him reluctant to have another child, since he might not be around. He said it was the opposite, that he’d better get moving, if he was going to die he wanted to have as much time as possible with both children. (He’s currently doing fine, cancer-free for 3 years and counting.)

I like to know about things I can change–like if I have a greater risk for breast cancer then I can get exams done more frequently. If it’s something like Huntington’s which has no cure, then I would not want to know…it would create too much anxiety for me and would not allow me to live my life as I would want to. The fear would consume me. But for things like Alzheimer’s and infertility, I for sure want to know because it could make a huge difference in treatment.

I like to know about everything, but that comes from the perspective that I’m pretty certain that I will likely have heart disease or osteoporosis or Type 2 diabetes (or maybe all three). It’s pretty strongly written in my genetic code.

I agree with most that I would want to know about things that I can take some course of action on, at the time that those actions can be taken. Like Alzheimer’s—I’d want to know when I was in early old age, so I could take any treatments available (right now they are helpful for very very early disease), plan for my care & try to organize my finances, etc… and to be able to savor the remaining moments with my loved ones. Knowing now would only lead to great anxiety, and even recklessness, and things in science & medicine, not to mention life in general, may change a lot in the remaining years.
Same with infertility. While I wish I knew soon after marriage, when we first started discussions about when to TTC, knowing much earlier wouldn’t have allowed me to do anything, and just made me even more anxiW~S13

If infertility testing weren’t quite so invasive, I’d want it to be an automatic part of my annual OB/GYN appointment at the age of 30. Same for guys. I think we would have spent money a little differently if we had known that we’d have this huge financial blip on the radar. My husband and I are both the kind of people who wouldn’t have let potential fertility problems stop us from marrying the people we love, so that wouldn’t have been issue. Seeing how many couples infertility splits up, I wonder if it isn’t the one of those “marriage testers” that causes you to prove how in love you really are.

If there was nothing I could do to prepare or stave off the illness, then I wouldn’t want to know. I’d only want the information if there was action to take. Because if not, it’s like someone saying they’ll slap you across the face…at some point…and you just need to sit there and wait for the hit. The anticipation would be horrible.

i guess i’m wishy-washy on this one. just because you have a genetic marker for something doesn’t mean that you will necessarily get it, right? that’s why some people who smoke get lung cancer and some don’t. there are usually a variety of things that have to fall into place that all have to be present to produce an outcome. most diseases we don’t know a whole lot about. we know how to slow progression or how to treat or prolong death….but we’re so clueless about so much. that’s why medicine is a game of rule outs a lot of the time.

having said that, i’m a planner. i would definitely want to know. i want to be able to plan for what might happen. BUT would i make drastic life changes based on something that hasn’t happened yet? (like bilateral mastectomy before cancer diagnosis)…..probably not. i suppose that’s another question entirely, though.

sorry it didn’t work out. we arrived home yesterday after 12 hours in the car. the kids were hit. today they have been crazy. i’m betting it will be at least a week before they recover. next year, though 🙂

For infertility I would definitely want to know, and as early as possible. If I would have known 14 years ago (when I started TTC) – a lot of things would be different. Of course, I wouldn’t want to change how my life is now (my husband for one thing, may not be my husband if I had known early) so it’s really hard to say.

If someone could actually tell me whether or not I’ll ever have a child – that would be awesome. I could either keep trying with a little more hope or just move on. The not knowning is a killer.

I would want to know if I was going to have Alzheimer’s or Huntington’s, etc. But, I’m not going to go out of my way to try and test for everything unless I see a reason to. My husband’s grandfather had Alzheimer’s so it may be a good idea for him to be tested one day (if he wants to be).

I would want to know. I like to know things. Even unpleasant things like if I’ll likely get a disease. I would like to prepare, as much as I’d be able, whether that’s researching and tracking down possible treatments or making sure I do all the things and visit all the places I want to while I still could.

Odd story about knowing ahead of time about our infertility. I had a reiki massage when we’d been TTC for about six months. The therapist was also (supposedly) a “seer”. She predicted that it would take us three years to get pregnant. Three months before we hit three years I got pregnant for the first time ever, but then miscarried. Three months after the three year anniversary I got pregnant with our triplets. She wasn’t exactly right, but she was pretty close. She also said there was a lot of gunk, like mucus, around my tubes, particularly the left side. A year later my HSG showed the left tube was blocked and the right was partially blocked. Weird, right?

I don’t think I’d want to know. That just feels like a major downer that I wouldn’t want to have in advance. I’m not sure I could mentally got around that day after day (esp. in advance of any symptoms). It would be bad enough having to live with the reality once it hit.